Category Archives: MS

Shake the Disease

It’s been a while. I’m sorry.

No, I’m not. Life has been a whirlwind of emotion, illness, and not wanting to talk to people.

Since the last post one child has started Middle School, the other(the one with Aspergers)has finally had the chance to learn a skill and move forward in their job thanks to an amazing new boss, and I’ve dealt with a very close family member go through surgery due to cancer.

It’s been a hell of a month. We’ve had our good moments(took the kids to their first Comic Con-which incidentally was my first as well and oh my god I saw Alex Kingston and Jenna Coleman from a distance), My anime obsessed daughter got to meet and take a photo with one of her favorite anime voice actors(his assistant was just divine and I wish I could thank her for fixing what could have been a bad situation, with grace).

I’ve sat here on so many stories. I’ve sat here thinking about what life would be like if I could redo age 9 on up. Part of me has been paralyzed with fear. I’ve tried writing but the words get muddled. I blame the MS sometimes. But I know this is a horrible excuse.

One of the things I swore when I was first diagnosed over 23 years ago(symptoms started 4 before this and suspected by a doctor) was that I wasn’t going to let it interfere in my life. Yet, here we are.

I’m tired all the time. Except for the times I ingest caffeine. I quit caffeinated coffee 13 some years ago. Two months before my wedding. I had been having severe panic attacks and I didn’t know what they were. After several hours in the ER(where after not being seen for 4 I finally turned to J and said “Lets go home”-I’m surprised he still married me) the Doctor I saw two days later told me my intake was a contributor and go turkey. So of course this two pot a day for 16 years person suddenly gained 10 lbs before their wedding. A first according to the woman who was fitting my 30’s inspired wedding dress. She did not like me.

Let me go back, I have my moments. This disease. This illness. It’s not a disease. You can’t catch it.

I don’t like myself. I hate myself often. I hate myself for not following through on my dreams. I’ve wanted to be a published writer. Ever since I could hold a pencil and wrote my first stories in grade school. Yet, I let the emotional and health difficulties get in the way and take me down. I’ve let the issues with my children and my own self-esteem tear me apart. I’ve let this illness bring me down.

I see other friends talk about how much writing they’ve accomplished each day and I find myself incredulous and angry. Jealous. I hope for a couple hours every two weeks. It’s what I can deal with when my brain is coping in good months. In bad months, with the responsibilities and the anxiety/depression I already I deal with, I give myself no deadline. It’s what I can do when I can do it.

 

 

 

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Disappear

Some days, that’s what I feel like doing.

Just taking off to places unknown. Where no one knows me. Where perhaps I could start over my life. Taking the fewest belongings and running.

But…

Every time I think of this, every time this desire to move or to run has come over me these days(especially these days, because earlier days I came really close to just running) I’ve come to the conclusion that whatever it is I’m trying to run away from is going to follow me.

I constantly want to move away from every town I’m in the last twenty years. I figure that if I keep going, if I find this so-called utopia that exists in the back of my mind all would be ok, my pain and my problems would all disappear.

Then I grew up. Or rather I figured it out. I’ve been trying to escape the pain for so long that I’ve thought that running would fix it. A change of place. New people. However, that doesn’t change that just maybe I’m still me. I have some friends. Some they come and go. I can’t seem to keep them for long. Or I keep them as if they were in the back of my pockets and only taken out when needed. Only it’s me that they don’t need.

I’m still the me with the same desires. The same fears. The same tragedies from the past holding me down mentally and often physically. I fall into bad patterns and can’t seem to crawl myself out from under them. For years I ignored them and figured it was just the pain seeping through and all I could do was push them aside, these patterns, try to find a way to muddle through. Be it through cigarettes and alcohol, or through one bad relationship after another.

Part of my reason for writing this is that I feel alone. Don’t we all. We all always feel alone. I have friends who have literally disappeared. Some I’ve grown apart from. Our ideals no longer match, and that’s hard to realize and accept. Others, they just decide they want nothing to do with you because you no longer fit what they need. You aren’t good enough perhaps. I don’t know. I try with others so often that I’ve come to the point of rejection that I’ve decided I won’t try anymore with anyone.

I had so many dreams growing up. The earliest of course being that I wanted to become a successful writer. After that, actress, forensic psychologist and salon owner fell into place one behind the other. The writing was part of me, it became ingrained in me from a young age when I taught myself how to read at a very young age out of determination and jealousy that my older siblings could go off to school and I couldn’t. From there, as my mother would recount, was when I fell in love with the written word. When even the smell of books would makes me happy. It still does to this day.

Books were my escape as a child and even now. When things become unbearable I know that I have different lives that aren’t mine to escape into. Both fiction and non-fiction.

To go back to where I started with this however, I’ve come to a point where I’ve realized that I can’t run away. I wish I could. I wish sometimes I could pack up my kids, my cats and dog, my husband and my many books, and just go. Anywhere.

I’ve yet to find a town that understands me. It could be turned around that I’ve given nowhere a chance.  I’ve given everywhere a chance. Everywhere just hasn’t given me a chance to be who I am.

I’m going to turn back to writing. I have a book I’ve been writing off and on for about two years. About a woman and her experiences with MS but, there’s a twist, a couple twists and it’s not what you’d expect. There have been few to no books or movies/shows that have dealt with MS and I think it’s time.

I need to refocus myself and finish this book. I’ve been afraid of it for so long because some of the tribulations the character goes through are what I have with MS. She’s me, but not me. There are parts of the book and characters that now looking upon them after all this time I think needs tweaking but for the most part, I like the direction the book has been going. I just need to get back to it.

I need to forget everyone who seems to have forgotten about me. That includes friends AND family.

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Easily Undone

glasses

 

This week has been a strange blur.

First, I’m dealing with the fact that I’m back here. Here. Writing. Trying to put myself out there. Even if it is just for me, or for the few who actually bother to read what I have to say. Still, I’m doing what I need to do.

This week has been strange. Emotional. Physical.

The holiday being in the middle of the week threw me, and my family, off. Nothing has been normal. Add the full moon tonight, a power which I strongly believe in, and my energy and my output and emotions have been thrown all over the place.

Let me start with this: With the longtime MS I’ve had physical limitations. And over the last two years they’ve been more intense than usual, partially due to my mental/emotional issues/responses to the MS. My anxiety and depression being so deadening I found myself spending a good part of the year curled into a ball in bed or on the couch when the youngest was at school. I lost a good portion of who I was. This year was my worst. It was late spring when I slowly, but surely started to climb out of this. I’m still climbing. And this summer, knowing that summer is usually my roughest time of year, I’m actually doing fairly well, considering.

Anyways, with these issues, I gained weight. My legs became weaker. My legs have always been a huge issue with my MS. They were one of the first indications I had MS. Years before I was officially diagnosed. Sometimes they feel like dead weights. But late spring I forced myself to get up and start walking. I would push myself till I could start walking to meet the kid at school a few blocks away. While to most of you out there, you’re thinking “I can do this any day”. For those of us with decades of a neurological illness that affects every aspect of your daily being, your daily movement, to fall into this type of trap and eventual ability to crawl out of it, is monumental.

As I said in my initial “I’m Back”, there is a lot I could go into regarding the hell I’ve been through with the MS the last couple of years, but I’m not going to drop it all here and now.

The weight gain isn’t huge, but for me it is. I’m not who I remember, yet at the same time I’ve come to love myself a lot more now, in my nearly late 40’s, than I ever did in my 20’s or 30’s. I’ve come to understand that my body has its moments, its limitations, and it’s still worth being here. I have a spouse who loves me. Who doesn’t mind that I’m not perfect. I’m not a waif. I was, back in my 20’s and early 30’s when I was post divorce and smoked my brains out.

When I was a size 2/4/6 I pushed myself hard. I was a smoker. I smoked because it was for the most part, what I was taught was the way to keep my weight down. It’s been 12 years now. Since I quit. I don’t talk about this often. I’ve had my few moments where I’ve had one in serious times of stress. Every couple of years. There was the time 11 got her head stuck in the railing(age 4) and the fire department had to pry her out. The time my AC died and we were fairly broke at the time and it cost and arm and a leg. And I had to take the kids to my mother’s. My brother was there and he handed me one on the porch and I didn’t blink. I knew better and felt worse the next day.

May I add that I took myself to the immediate care this week to rule out a blood clot in my leg due to serious pain? I knew I was being dramatic. That the pain was me and the new workout routine aggravating a former muscle tear. After two hours and an ultrasound, I was right. But it was worth the peace of mind. Also, never Google leg pain. Ever.

Also, late night fights with glasses are rough. The winner is usually undetermined. Especially when the amount of wine drunk is a catalyst.

 

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The Simple Story

I’m back. For now.

The last three years has been eventful and at times, not so much.

It’s been equal parts exploration and misery.

The MS hit a point that it’s never hit before and it caused me to stop driving. Period. Nothing. Nada. Nope. 18 months ago.

I’m still on the precipice of starting over. Only in the last two months have I tried. It’s been…ok.

Much of this was caused by a severe uptick in anxiety. Most of it due to my MS. My vision issues bite.  Primarily social anxiety.

I’ve always dealt with not always fitting in with others, though usually I would find those who stood on the outside, just on the very outside, just like me, that I could be friends with. This town however, it broke me. It broke someone like me. It’s good at breaking people because of who you have to be on a regular basis, but I could never and will nor want to, fit in. Therefore, I’ve been a prime target by other parents.

There it is. Parenting is a bitch when you aren’t custom made, custom ordered. When you don’t try to be everything for everyone else. And you god forbid, have tattoos and fight against the normal. Listen to music that can’t be found in the top 50, and understand the ways of others that think outside the box, who might deal with feelings in ways unorthodox to you.  In a town so dead set on being normal that if your daughter doesn’t wear the right brand of underwear she’s an outcast.

I won’t abide by this. I never thought I would. I grew up in a town similar to this. It’s where I lost myself. Where I realized I would never be what my family wanted me to be. Despite the traumas I experienced that I never asked for. Not that anyone ever asks for any traumas.  This I’ll go into as time goes on.

I’ve chosen to keep this off social media this time around. I’m not looking for the hits. I just need the output, the ability to write my feelings out. I had to start seeing a therapist on a regular basis this past year and she’s finally sussed out that my problems with feeling dead inside sometimes has to do with my family and especially what I dealt with growing up in the town I did. The abuse I experienced emotionally and mentally from family and friends. From expectations. Why the past year I’ve kept a serious distance from most of my family.

I know this is the most depressing “Hello” you might read, however this is what it is. I promise, it won’t always be this dark, but for me, some days it will be.

 

 

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The Awakening

A couple of days after my last post I found myself in the Emergency Room.

It was something I wasn’t expecting at all. Despite what I had written about a few days before, things had been relatively stable.

It was monday morning. I took 8 to school. I was in a good mood, a productive one. I took my iPad and phone up to my bed. I was sitting there making long needed appointments for the family. My cats were curled up near me. I was on hold with one doctor’s office. Suddenly something came over me. It was like a “whoosh” feeling that began from my head and went down to my toes. I couldn’t explain it then, I can’t explain it now.

As that happened I suddenly fell over to the left. My whole body just tilted over. The tremors began. I grabbed the side of the bed to keep myself steady. I was aware of what was going on, but I was terrified. My eyes wanted to close. I struggled to keep them open, and my head up. I was dizzy. Just trying to grab my phone to find someone, anyone, felt impossible. I cried. I tried calling my friend Jess. No answer. Then my mom. No answer. My husband. No answer. I managed to text my brother who would know where our mother was. Told him it was an emergency. He called me back. I explained what was happening. He told me she was out of town for a day. Something about Galena. Ok.

I told him I think it’s a seizure. Not sure. I’ve had this happen before the last couple of months. A couple of times. Not sure why or what they were.

Jess finds me first. She says she can be there in a half hour, she’s out. I call the doctor, talk to the nurse. She tells me she will not hang up until my friend gets there. We have a 30 minute conversation. In that time, I finally stop tremoring enough to lift my head. To walk downstairs. Husband calls and he immediately leaves work. Jess arrives.

The nurse told me to go to immediate care which I didn’t think twice about, but now disturbs me because with their limited ability to treat me whether it was a seizure or my MS, why would she not tell me to go to the ER? Because I went to the immediate care. They couldn’t do anything for me and within 45 minutes they sent me to the hospital. Where I spent the next five hours.

Tests. Tests after tests. The focus for some odd reason was on my chest. At one point the technician came to get me for a chest x-ray. Now here’s me, in a hospital bed, thinking either I had a seizure(as I had epilepsy as a child) or it was a rather odd & wicked MS exacerbation, and someone wants to take a picture of my chest? It made no sense. And as someone who has spent the majority of their whole life in and out of hospitals, I questioned it.

Later it turned out my blood tests showed mild clotting, which they then told me was also common in those of us with MS & other immune disorders. So then I spent nearly 2 hours taking in radioactive fumes via mouth to light up my lungs to check for a blood clot. Which was, surprise! Negative. I could have told them that and saved my insurance a lot of money.

I was discharged and told not to drive till I saw my neuro later that week. And when I saw her, she told me she didn’t think it was a seizure. Despite my mother sitting there saying that she dealt with my seizures for nearly 2 decades and my descriptions of what was happening was damn similar. The Neuro’s reasoning was that I wasn’t unconscious.

I have no words. So angry. I think I’ve read more about my type of seizures over the last 44 years(I developed them age 1, they slowed down by 20 with only two in my twenties that we know of) than she has. I recounted this whole visit to my father that day. And he said the same, ” you were NEVER unconscious during your seizures”. I knew this. They weren’t the typical. I lost faith in my Neuro that day.

We’re still not sure what’s going on. I’m noticing a pattern. I thought they were panic attacks. But I don’t think so anymore. It’s something else. The Neuro wants to think it’s a combination of MS and hormonal.

Whatever it is it threw a monkey wrench into my life this week making me feel as if I couldn’t even take care of my own family. My friends were amazing and I owe them everything. They took care of 8, picking her up and driving her everywhere when I was unable to drive. I don’t like asking anyone for anything so this was hard for me.

Next weekend I restart the Tecfidera. My mother told me after the Neuro’s appointment “You put everything off, to take care of everyone else. But now you’re seeing the end result. You’re actually getting sick. They need you here to take care of them, so it’s time. Take the meds, or you won’t be here for them “.

I’ve gone this long. Nearly 25 years with minimal medication. I’ve defeated so many odds according to the doctors over the years. But I’m no longer invincible, I’m not the superhero I thought I was.

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Here it Goes

The last few months have been eventful.

Or rather at the same time, not enough.

Not enough to write about.

I’ve preferred to keep them close to the chest. Too much pain and confusion. Too much hurt.

See, I’ve been going through the worst depression of my life. Yet, I’ve done little to deal with it.

By now most people would have been to see a doctor and had a prescription given to them I’m wary. While I know that some work and they certainly work for my son to a certain degree, I am also acutely aware of how I want to feel and after all these years of feeling pain & confusion I’m not ready to rid myself of those emotions.

I’ve preferred to spend the last few months drowning, but coping. Helping my kids deal with whatever they were going through at school academically and with their peers. Just trying to be there for my husband through very exhausting and stressful times at work.

Yet…

There has been the usual.

Of course.

My health issues are always here. They’ll never go away and sometimes they’ll get worse. And lately that’s been the case.

I do try to pretend they don’t exist. Hell this is what I’ve done for nearly two decades. Pretend they’re not here. However lately things have been an absolute mess and I know that they’re the reason for the increase in the depression/anxiety issues.

I could start with the disability filing.It’s exhausting. What you’re subjected to. How to explain to a psychologist in a very short amount of time how angry and miserable you are. And really, you don’t get that much of time to explain this.You don’t get to explain that you have decent days. However those good days are fleeting and you have several hours within those days without issue. But most of those days you’re so petrified of driving because your sight is a mess, and because well, you can’t explain why but you’re driving home from the grocery store & your chest constricts. And the next thing you know you’re gripping your steering wheel, you notice that your feet are tingling, your eyes want to close, you feel as if you can’t breathe.

And nothing you do can change this. You try to change the station on the radio, or you turn it off.

Silence often helps.

This is a panic/anxiety attack. This is what happens when after 20 + years of MS you’re terrified to get behind the wheel. When there are only certain roads you can drive without the fear and bile rising within your throat due the fact that when you took them before you had flares.

This is life with MS.

Or rather…this is just a snapshot. This is a snapshot of my life. My life which used to seem so easy. Which has become so complex that I’m afraid to drive outside of my comfort zone that consists of the several blocks around my house. This is where things get so painful.

Imagine trying to leave your house to run a simple errand only you just can’t. It’s near impossible without that strange feeling beginning in your throat and your chest. Lately hitting red lights sends me into an absolute panic. There are certain main roads around here where when at a red light you’re on an incline. Because of this I’ve figured out ways to get around them & take short cuts. Just to avoid being stuck in that position. Again, this is just a snapshot.

And why the denial for disability was so heartbreaking. I was thankful however when my attorney’s office explained that an initial denial was almost the normal & that we had to appeal. Just last week I filled out those papers and sent them in. Next week I meet with a psychiatrist for the first time. I’m at the point where I need to do something to relieve the fears & anxiety that have been such a huge part of who I’ve been lately. Or rather, a detrimental part.

During all this I was fighting with the insurance & the pharmacy regarding the dosage issue with my Tecfidera. In case you don’t remember, I was on it for a short while last summer. Then I had the side effects that no one was supposed to have. Or rather, just the small minority. As my neurologist has now realized, if it’s a minor side effect I’m going to have it. Such as my colon going into distress after a couple of days on the high dosage. I’ve been off for nearly a year. It took this long to get us to agree I need to be on SOMETHING. I no longer have a choice. My once extremely passive MS has suddenly decided it wants to torture me. Which also makes me want to kick myself many times for not fulfilling many life dreams ahead of time. I’m working on trying to get things accomplished before the MS decides to go even more ballistic.

To make a long(sorry, VERY long) story short, after several months of insurance fighting the prescription being lowered to just one 120 a day(which is minimal) to give me a chance to adjust, they finally gave in two weeks ago. To say this argument was draining would be an understatement. It was a good deal of my depression the last few months. I spent at least an hour a day on the phone daily for 4 months with insurance or my doctor’s office. Who knew going on a lower dose would be so trying.

Deep breathes.

Ok, so we’re here. It’s all done. Just need to continue with the disability hurdle.

There have been other things going on, but I refuse to make this “the most depressing blog post ever”.

I’ll save it for a couple of days from now. At least that will bring my average of posting up from every few months to every few days.

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Greetings & Salutations

It’s been a while. It’s a New Year.

I disappeared. I had to.

Life has been life the last few months. My mind has been ridiculous. It goes from one thing to another and won’t settle. Sometimes it does settle and doesn’t return for a few weeks. So maybe the previous sentence is an exaggeration.

Last I wrote I talked of some health issues.

They’ve remained the same. The MS has been a bit aggressive. In ways I wish it weren’t. Some days I wonder if I should just turn this blog around into one about the MS because in reality I’ve had this for over 2 decades and I’ve been through so much that maybe I may inspire someone or maybe I may piss someone off. Either one would be fine with me at this point. I can’t hope to be everything to everyone. No one can. That would be impossible. So that is the conundrum, should I or shouldn’t I? I’m leaning toward the latter which leads me to-

I want this to be the initial “Hello” after so many months of not writing. Of not being able to write. I was honestly paralyzed with fear about writing here. So I’m going to break this down a bit.

– 16 had a lot of problems with depression his first semester. It wasn’t pretty. And he basically came close to failing half his classes. But pulled most of them up last minute. Still. He was miserable & it was a horrible experience to deal with. He’s ok now. Second semester he loves his classes & he’s doing “ok”. He’s such a sweet kid & after talks with friends I’m working out ways to get him more socially involved, through methods not really explored before.

– His school come December at our annual IEP meeting had no record of him having Aspergers. His father and I sat there with jaws dropped going “what the fuck?” as they discussed the points of his IEP and what his issues were. He had been diagnosed for a few years. None of the records matched what we came to the school with. Hell, I signed papers for them to contact his doctors about his diagnoses at the beginning of freshman year. Apparently they never contacted his Psychiatrist. This is what she told me. She showed me all of the records of contact from the schools over the last few years, and not one contact came from the High School. I was furious. A year wasted. Interaction wasted. I just can’t even talk about it anymore without wanting to scream at someone at his school. It’s honestly something I can’t speak of without becoming dramatic.

-My anxiety & eye issues are related. This was made clear by my Neurologist in December. Oh, December. There were two weeks full of school meetings and numerous Dr. appointments. One of them was the visit to the Opthamologist. Where they ran numerous fun tests on my eyes to check the state of my sight. And they eventually settled on the following: I’ve lost 95% of my peripheral vision(tell me something I didn’t know), I suffer from bouts of Optic Neuritis(again, tell me something I don’t know), and that the issues I’ve been dealing with since last february off and on MAY be Myasthenia Gravis. If you don’t know what it is google it, even I can’t explain it well.

Ok. So that was all settled. Good to know. I wasn’t losing my mind. However the anxiety about losing my sight has become a bit overwhelming. I don’t think I’ve communicated that to anyone. I know I’m not necessarily going blind, but with all these problems there are times it feels like I am.

Back to the Myasthenia Gravis. I saw my Neurologist a week after seeing the eye doctor. She had me take a blood test right then and there to find out if I had the antibodies for the MG. They came out negative, so she relayed to me that the symptoms I have where when stressed or tired my eye muscles just shut down my eyes which mimic the MG are just really unusual symptoms of the MS. Oh yay. Not surprised, since after all if there’s an extreme reaction to a medication I’ll be that 8 % that has that reaction. So why wouldn’t I have the weird symptoms of MS no one else has? Or at least rarely has.

I’ve had so many flares or something similar to them over the last two years, while I’ve been driving that driving has become something I approach with trepidation. I don’t drive at night, and the idea of going out near twilight hours actually will throw me off. Which is why I’m no longer allowed to.

After the accident in our own driveway in May where I hit J’s car there’s no way I’m allowed to drive when my eyes aren’t doing well. When I’m tired. Or when it’s close to being dark. Even on clear days and his car is parked on his side of the driveway he moves his car when I need to pull out. It’s that bad.

-A few weeks ago during a bad ice/rain storm that came about just after a wicked snowstorm I found myself experiencing my first frightening car accident. I hit a huge black ice patch, my brakes wouldn’t work no matter how hard I pumped them, and I had a choice of either going head on into a busy intersection or pulling hard left into a tree. The tree won. With my 7 yr old in back I pulled the car as hard left as I could and though I was maybe going 5-10 mph I managed to fly up the curb into the tree. We bounced off the tree and my car was stuck there. There was a lot of screaming & crying from both of us. We went back to my friend’s house. Her husband pulled my car out, and my mother & her husband came to retrieve us and take us home.

Since then, the weather has remained a bit undetermined. The cold & snow has left the roads unpredictable. I hit a small ice patch the other day. All was ok but I noticed from the backseat she gripped the arms of her car seat. She’s still scared. Her dad did similar the other night and I saw her do the same. She’s still frightened by what happened. And I honestly don’t blame her.

– I’m dealing with other things that range from the bitch of dealing with disability filing to other family issues that I honestly don’t know how to think straight and write here. I’m going to work on it.

Lately music has really come into play again in my life as it has been such a big part of who I’ve been for the last…well, since I could walk, talk and sing. There were songs that I could credit in getting me to write here again but I’m not going to bring them up.

Another day…Another Time.

For now I have to say…I’m working on it. This thing called life. I’m trying to figure out how to keep going when it all seems as if it’s falling apart.

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